Registered: 1501322168 Posts: 2
Reply with quote #1
Hello, my boyfriend is the one with CVS and he's been sick since last Saturday (a full week now). We've been together for a year and a half and for that time his episodes are random but only last a day. This time is different, and I don't know what to do. He hasn't slept very much, he tells me it hurts his stomach to lie down. When he doesn't feel nauseous he eats, but later, probably at night it will come back up. I tried to get him to go to the ER last night, but he doesn't wanna. He says he won't be able to smoke weed (obviously) and won't be able to take hot showers. I'm very worried and would appreciate any help. I was really wondering how long other peoples episodes last. Has it been this long?
Thank you so much for any help/advice!
Registered: 1111176341 Posts: 4,481
Reply with quote #2
Often as a person gets dehydrated they cannot make a rational decision. If he is dehydrating you might need to take control and force him to the ER.
Have you tried to reach his CVS MD? the doctor might be able to arrange for a home service to come by with meds and IVs. S/he might order an antiemetic and other meds to try to stop the cycle. A week is a long time. I would also ask about him eating, he might need to be NPO for a time but it is tricky getting enough fluid in plus limiting food makes it more difficult. I understand about the smoking as the ER will probably test to see what is in his body. Adding some meds on top of the marijuana might be dangerous. Hot showers are a relief for some with CVS and often seem to also be a relief for those who have Cannabis Hyperemesis Syndrome. He might need to stop smoking so he can find out if the marijuana is causing CHS or not. He has a formal diagnosis and has had the testing for CVS diagnosis? __________________ ginny CVSA Moderator
Registered: 1492213133 Posts: 50
Reply with quote #3
What have you gotten your self into? this is going to be very hard to deal with! number one the pot, he has to stop for a time, if the ER people already have him down as a smoker that could be trouble. I say don't pee for them "I can't go now etc" just leave the cup in the toilet. if he is already listed as a smoker they can be very mean, but taking some time off of pot and getting it out of his blood could show them he is trying to cope and making some kind of progress to find out if it is part of the problem. Eating" try clear liquids" broth is soothing and can stay down. if you look at my last post I had the best ER visit in a long time "I have been doing this for 23-4 years" I would be happy to give you the dosages they gave me last ER visit and perhaps he could ask the ER Dr to try that (private message me and I will give you the dosage they gave me) the episode was over in minutes! that was just a fluke perhaps . but to stay home and try to ride it out is hard, on him as well as you. I wish you and him well. Steve
Registered: 1501322168 Posts: 2
Reply with quote #4
Thank you everyone. He finally went to the hospital on Saturday, and they kept him till Saturday. They did an MRI, blood and urine tests and he was severely dehydrated which was affecting his kidneys. The kidney dr actually told him weed was ok occasionally but in the long term can affect his kidneys, he was quite nice about it.
However, this morning the vomiting started again and we took him back to the hospital and they're going to do an endoscopy.
I wish I knew if the pot was really doing this to him or not, but he's had this since he was about 10 and he didn't start smoking until he was 20.
My anxiety is through the roof and I have a hard time going to work because I'm just so worried about him. What if it never ends?? That's my thought process.
Thank you both for replying, it helps to know there are other people dealing with this.
Registered: 1492213133 Posts: 50
Reply with quote #5
wish I had girlfriend like you. but I tell you this as it was told to me on this site over ten years ago, once you got it you got it and thats it! I have had all the tests down the throut up the butt and all they could charge the insurance co's for! sorry to say this to you but for me I had to except it. stop looking for a cure, there isn't one! just be calm and ready for the next time. have your hospital bag ready, change of clothes, documents, get a Dr who understands CVS and will give you the drugs and just live with it! when they come up with a cure you will hear about it. running around helter skelter is just a waste of time, money and will just ware you out. when I found out I had CVS I was handing out flyers on the street corner, guess what, that was 15 years ago. now the vains in my arm are shot and I have a port-a-cath in my chest for IV meds, gosh I wish I had better things to tell you but after 23 years of this I had to except the fact, I have this and must live with it. the ER people get tired of us but we have no were eles to go, try to get them to understand, they will ask you what is you and your DR's plan, there is no plan and all you can do is treat it when it happens, I carry a binder with as much information and notes from my Dr, it is quite impressive and it shows the ER doc's I have done my home work and I don't have to answer all the questions they ask over and over while you are retching on the bed. the best advice I can give is give in and except the fact that you have CVS, it is hard I know but,dam!
Registered: 1350591217 Posts: 701
Reply with quote #6
The thought of it never ending is very intimidating. Living with the fear of when it will start, if it will end, how you can manage when dealing with CVS.. is all part of the anxiety.
I can't say that I agree with Steve on the never ending part of it. People have gone into a remission of sorts from it. Or out grown it (for kids). My son has had a couple periods of remission. 6 months old until 2nd grade. Then he was okay from 3rd grade until 8th grade. Now we have been dealing with CVS struggles since 8th grade. The more we learn and experience, the more we are capable of combating the anxiety. Finding competent doctors and getting a fantastic care plan in place has gone a long way to alleviate that as well. Our care team always has the next plan. They have always had plan A though C for treating my son. I will agree with Steve on one really important point. The more prepared you feel.. and are.. the easier it will be to handle. From there it should just get easier and easier. Having a great support system (you) is very important. You are doing a great job. Especially the research and support. Keep it up. It is more helpful than we can know as caregivers. __________________ Blynda Message Board Moderator Monthly Support Call Moderator